More info ... (can you tell I tend toward hypochondria) ... For about 2 years I've had a chronic feeling of low temperature in the morning and occasionally the late evening, like pre-flu "chills" but without any fever (my temp is usually 97 or below, sometimes as low as 95). Back when I had insurance my doctor said she thought it might be a thyroid condition, and wanted me to take a test, but then I ran out of both insurance and money, so no more tests (it took me months as it was, just to pay for the appointment at which she suggested the tests, which is kind of ironic!).
About 1 year ago I had a colposcopy for mildly abnormal pap results, which came back negative -- no visible abnormalities; the doctor thought it was a good idea to do a couple of biopsies anyway, just for extra assurance even though nothing was visible during the colposcopy, and the biopsies also came back negative. I did talk to the doc who did the colposcopy about my fears about cancer (at that time I had no back pain symptoms, just the gassy feeling) and she raised an eyebrow at me and said "I suppose you want a CA-125 test" which of course cowed me into saying no, it's okay. (Which I think was her aim.)
Bleeding is regular at 24-29 days; but my cycle has shifted by about 2 weeks to a different phase of the moon, which seems really weird to me after so many years of the same phase, even after my period resumed post-pregnancy. I was always a full-moon gal and now I'm a new-moon gal. I'm 43 though, so maybe that's pretty normal. Period was heavier than I'm used to for a few months but is now back to normal/light flow. It was also kind of purplish but is now more red. (I know, too much information ...)
Thanks again for listening,
I dont entirely understand all the mithering with the insurance because I'm from the UK. However the very next thing you need to do is make an appointment through your regular GP for an ultrasound and Trans vaginal ultrasound. It might also be worth getting your GP to palpatate your ovaries. Cancer is way down the bottom of the list of things to worry about at this stage and its a long old dx process so try not to think about it.
Your symptoms are also very similar to IBS but dont be fobbed off with this DX. Ask for the tests I mentioned in the last post.
Thanks anna-maria. You are lucky to live in a country where health care is a right; a huge number of Americans aren't insured and basically just keep our fingers crossed, because insurance can cost huge amounts of money even for sub-optimal coverage.
I pay about $100 a month and the insurance is supposed to pay 80% of "usual and customary" charges but from my experience from having this insurance plan previously, the reality is they pay about 50% of the total and the rest is on me.
Doctor appointments cost $75 and up just to be seen, and can be much more for specialists, tests, etc. Compared to Canadian and UK health care systems, ours is a sick joke, no pun intended!
I hope something changes here but for now, that's the way it is. I hear there are trade-offs with public health as well ...
OK that's enough politics. :)
Thanks for the advice. I'm going to do it as soon as I can. I've located a gyn/onco about 90 minutes away who is covered by my new insurance, and I plan to get referred for an appointment with her asap to be evaluated. My local doctor is nice enough, but this is a small town, and after reading all the posts here, I feel the need to have someone with experience check this out!
I have a question: did they discover your entangled bowel/bladder/ovarian issue from a CT or ultrasound or did they only find it when they opened you up? Thanks. Lilly
hi. I am also from the uk,but dont be fooled by our free for all health system. There are long waits(3-4mths) to see specialists and long surgery lists,many often getting cancelled at the last minute!.
That said your symptoms are very similar to what i had and at first it was considered to be IBS(dont they just love to say its just IBS for every ailment that involves a bowel habit change)but i pushed and even paid privately to see specialist.I had to push again with him as he too thought it was a bowel issue not ovarian.
I had days of constipation(never had it in my life before)followed by loose stools. Pain in groin and hip(thought i had strained myself)especially after standing for long periods. Used to be very uncomfortable when i opened my bowels or when wind travelled past a certain area.Sex was painful.Urinating was sometimes painful,other times ok.Lying on left side in bed was painful. When the pain first started it was just a niggle a bit like stitch and only every now and again.Then about 4mths later it got more and more painful and more and more constant until some days i cried. Just before surgery(both ovaries removed,womb removed 21 yrs ago)i was taking painkiller 24/7. When they opened me up they found both my left ovary and cyst was stuck solid to my bladder and bowel(the bowel was wrapped round it all),the op took nearly 4 hours and the surgeon said it was very tricky.So i did the right thing by pushing and no being fobbed off. Get a vaginal ultrasound and maybe a ct scan and see what that reveals,but do it sooner rather than later. Good luck i hope this was a help.
Ps the discription about the bee sting pain was spot on.
hi. Not to sure. I had my 1st abdominal ultrasound in sept. She could see the right ovary ok but not the left(she said the bowel was in the way) so did a vaginal ultrasound. Had another abdominal in oct and again they could not see the left ovary so again they had to do a vaginal. I might add that the vaginal was extreemly painful.2 days after having the second scan i got a call from my consultant saying they wanted me in hosp the following wk. I saw him briefly after the op and he said he knew from my last scan he had to get ovary out asap.I am assuming he had a good idea from the scan but could not be certain until they got in there. Does that help. Any questions dont hesitate,i have noticed you are having similar problems and really feel for you,i know how it fells when the so called specialist appear not to believe you. I am soo glad i followed my instincts.Good luck.Dawn
Hello JJsmama--I sympathise with being sick w/o insurance. I started developing symptoms very much like yours almost 10 years ago, at the time I had a good job w/good insurance. So the doctors I went to did a ton of tests, mostly gastrointestinal, and said there was no physical reason for my symptoms. I eventually had to quit working because I was sick so often, and of course stopped going to doctors because I couldn't afford it and didn't think they would help.
Anyway, last spring I started having pelvic pain that was different than before, so I decided to pony up for a pelvic exam (after about 5 years without one). The doctor felt a "mass" on my ovary, did an ultrasound that showed a 5-cm cyst, and a CA-125 test which was abnormal (360, normal<35). She referred me to an oncologist at a university hospital, who said it looked like an endometrioma, but I still needed surgery to remove it. Well, to make a long story shorter, I was able to get the hospital to do the surgery for free by applying for their financial aid program. It took about 6 months of telephone calls, letters, etc to the financial aid department, and the process was a real pain in the a**, and the staff were really unhelpful, but I finally got the surgery last November. I had laparoscopic surgery which lasted about 3 hours (they thought it would take only about 30 minutes because it was "just a little cyst"), during which severe endometriosis throughout my pelvis and covering the bowel was found and removed. I only had to pay my referring gynecologist about $700, compared to about $15,000 that I would have owed without financial aid. Anyway, if you do need surgery, you might look into the hospitals financial aid program and see if they will pay for part of it. Sorry this post is so long, I hope it helps. Good luck.
i too used to get the feeling in the vagina . Almost like someone putting a sharp long needle up the one side. I used to stop what i was doing and cross my legs,dont know why!Did not really get the bubble thing but did get excess gas!I often used to feel like my guts were droping out of my vagina,i do have a bladder prolapse so i put it down to that but since the op i get no more of any of the previous symptoms.Keep talking it helps to share and know you are not "off your head".Dawn.
Ps hope the advil helped with the babbling bubbles.lol.
OMG - Talk about excess gas.... I'm just glad it's coming out b/c the pain of it staying in along with the other pain is too much. But, and sorry to get so graphic here, when I do pass the gas, it also feels to me that the insides are coming out that way and some incontinence takes place (I'm only 42!). I can also relate a little to the bubbly feeling. Oh, and another great diagnosis from a doctor - childbirth causes these problems, even after three years (doctors are jerks). Try and get something stronger than advil for the pain if it's keeping you up. If we don't get our sleep, then the problems are magnified 10-fold! Best wishes.... Lilly
Thanks for the tip about financial aid for surgery -- I never would have thought of that. You have put my mind more at ease. Isn't it odd to be more worried about the cost than getting rid of this pain, and here it is 3:30 in the morning again and I'm up because cramps are making it impossible for me to sleep. I don't even think I'm due for my period. Bleah.
I also realized that once I get through three months of coverage with my current insurance, I'd be eligible to apply for coverage from a better insurance plan without the pre-existing conditions bit, because that only kicks in if you haven't had continuous insurance for the previous three months. If you've had coverage for the past three months, you don't even have to fill out one of those long health questionnaires.
It's reassuring to know that this feeling is shared. I finally landed on the image of a bee-sting because it feels as if I'm being stung continuously (when it doesn't feel like I've been punched in the gut).
The other weird feeling is the bubbly/gassy thing, which sometimes feels "uterine" for lack of a better word, and often feels like it's inside the vagina. I don't even know how to describe that, but when I tried to discuss it with my doctor last year she just said "Well of course, you've been through childbirth." But I had almost 3 years post-childbirth without the feeling that I had a bubble that needed popping inside me. (I hope that even makes sense, it's such a weird sensation I don't know how else to describe it.) And the bubbly feeling has increased alongside all the other symptoms.
OK now I'm starting to babble about bubbles ... maybe it's time to try to sleep. Advil, take me away!
i do have IBS, had it for many years but it was totally diff when all this started and yes i did get little accidents(sorry if tmi)both ends,thats why i thought it was to do with prolapse.I also found that the gas hurt as it travelled past the site of the ovary.Sitting was also painful as was wearing a seat belt.Lots of things were done subconciously(sp)ie i used to walk around with my hands down my trousers holding my left side without realising.No wonder i got strange looks in the pub!lol.It's amazing how you live with the pain for so long 24/7 then have trouble remembering when its gone,a little like child birth i suppose.I can not express my feelings enough on you ladies that if you know something is not right do not be fobbed off,many a time i had lots of self doubts,but deep down i knew in my heart of hearts that all was not right,thank god i listened to my heart and not all those so-called specialists!Dawn
personal quest now.Is sex painful?.This was one of my first symptoms,that and going from omb once a day to up to seven times.Also the groin/hip pain but i put that down to my age.One of the reasons i was pretty sure it was my ovaries is ever since i had my first daughter i suffered ovarian pain every mth on the right side. That was my main reason for taking hrt for 12 years.I stopped taking it 3 years ago and the ovulation pain never returned. So when this niggle started on the left side i was sure it was the ovaries.Best part was 4 days after i paid privately(
"i used to walk around with my hands down my trousers holding my left side" LOL ... I often find myself doing this (but my hand is on the right side of my belly, not the left) while sitting at the computer.
That compulsion to hold my belly is one of the things that made me realize there is something "in there", along with looking in the mirror and noticing that my right side is so much larger than my left. Well, it's a lesson in paying attention, isn't it?
When I had two complex cysts back in May of '04, painful sex was my first symptom, and the pain after sex was pretty bad. That's what sent me to the Dr.; they were surgically removed. Now, since I've had all these problems within the past 2 months, it did start again with painful sex. I told my husband back in Aug./Sep./Oct. that I thought I had another cyst, but didn't do anything about it until all the other symptoms started in December. I don't know if it's painful now as it's been a while - I just have NO sex drive at all and I think that's a contributing symptom as well. Just my $0.02 worth. Best..... Lilly
p.s. Anyone know of anything I could take to get my sexuality back up (kinda hard with a belly the size of a 6-month pregnant person, though). TY
Truth be told, I've no idea whether there would be any pain from intercourse, since there hasn't been any since way before my symptoms started. ;) My drive is not down but DH's is, probably a side effect of his treatment, or just exhaustion from being a very involved parent. (He is doing evening childcare duty 4X/week right now to accomodate my work and school schedule.)
My appetite for food isn't down either, although when I'm about to start eating I'm always conscious of the fact that the pain will start soon. I imagine after some getting used to that, one's appetite might go down just out of a sense of self preservation!
I've been diagnosed with IBS before, but since I changed my diet to whole grains and stopped drinking coffee it's been much better. The exception is when I wake up in the morning: I have IBS pain as soon as I'm up and about for more than a few minutes. I've been taking an over-the-counter IBS supplement made by Ganeden and it seems to calm my stomach a lot if I take it pretty soon after I wake up. I also have less pain, especially back and hip pain, if I avoid driving. (Which is not usually possible.)
I do have pain with ovulation, but that's been there since before I had my son. The main thing I've been taking note of lately is the lower-right pains I feel when I am eating, and urgency when I have to have a BM -- lower back pressure and hip pain becomes really bad when I'm full & is much relieved by evacuating. (TMI! Sorry!)
Thanks for listening. I am getting the courage to call and make an appointment with my doctor on Monday. It's amazing how much power she has to make me feel like a hypochondriac, and I dread another raised-eyebrow response if I request a CA-125. But she should be able to at least do a vag ultrasound in her office without too much fuss.
I have a mixture of most of the symptoms listed here, I was diagnosed with IBS about 20 Years ago, i have also had period problems and went to see a consultant who wanted to put me on a very expensive treatment through my doctor the treatment would force my body into early menopause, but the doctor wouldn't put me on the treatment as it was so expensive and here in the UK the NHS have fixed budgets and my doctors did not want it coming out of thier budget so this meant i could not carry on seeing the consultant as there was no point, at the same time as i asked this doctor about this certain treatment my ankles had swollen and all i could get on was a pair of sandals that stretched so i asked for something to take the swelling down, and his repy was your an addictive sort of personality, because i used to drink quite a lot (although not an alcoholic) and smoke, the cheek of it was he was marreid with 5 kids having an affair with a woman who suffered severe pain and he was prescribing her morphine, in the end he got sacked and he was not allowed to carry drugs when doing visits. He now is a doctor in Northampton area of England. So you see the British NHS ain't all its cracked up to be. I have heard the Cypriot, Spanish and Cuban Healthcare systems are very good.
The hip pain started shortly after i tripped at work and my body twisted as i tried to old myself up, spraining my wrist at the same time. This happened last October in December i evetually went to the doctor who told me he thought it was my spine and put me forward for physio, and apparently my muscles from the waist down are weak, but i was given exercises and movement improved a little, he asked me whether i have any bladder or bowel probs i mentioned the IBS but not the leaking that i get if i sneeze or cough, also the odour, i actually think i have some kind of blockage in intestines, i am in extreme agony after standing all day watching car racing at Silverstone last Sunday, not sure what to do now as the doctor will probably refer me for physio again